“They’ve written papers on him, because they’ve never seen anything quite like it,” said Hanna Rapini, Cole’s mother.

It’s a medical condition that’s caused severe developmental delays.

In March 2008, Cole was born completely healthy, but after one-month, his condition started to worsen, Hanna said. A few months after he was born, he had excess tissue removed from his airway. Then, fluid built up in the layers of his retina, something his doctor had never seen before.

Cole is now left with hearing loss and little vision – he sees mostly shadows, his parents said.

His young life, full of hundreds hospital visits and eight surgeries. Now, doctors have told Cole’s parents he will live for only a couple more years -- as the grey matter of his brain begins to deteriorate.

“For the last four years that's what we've done and now we know that it's leading to this and we have a few years to make up for fun stuff,” Hanna said.

Fun -- on an 81 item bucket list.

“We just kind of focus on the good things,” said Chris Rapini, Cole’s father.

The list includes playing duck-duck-goose, meeting a celebrity, even lying on a blanket looking at the stars – events Cole’s parents said are memories their son will always remember.

“Right now he's happy,” Chris said. “It's really not fair to him for us to be a in a bad mood.”

“We can't grieve for Cole yet, he's so much alive,” Hanna said. “He's such a happy kid. He's still here. We will deal with those emotions and those issues when they come, but right now, we just have to make the best of the time that we do have left with him.”

Both Hanna and Chris have been tested for genetic problems they may carry, but there’s no answer to their son’s illness. They hope their story helps other parents whose children are in the same situation – or who may have the same symptoms as Cole.